Georgia Rivers and Monique Huysamen discuss their research into how social care policy and organisations can better understand how autistic adults and people with learning disabilities express their desires and explore sexual intimacy.
Autistic people and people with learning disabilities are often excluded from conversations about sex and relationships. In social care, this leads to a lack of support around sex and relationships needs, despite these being linked to overall wellbeing.
In response to these gaps in understanding and policy, in 2023 we conducted an overview of how national policy conceptualises the intimate lives of autistic people. Our national policy analysis shows that national health and social care policy documents (such as the National Autism Strategy, CQC reports, and guidance documents) completely overlook this aspectof autistic people’s lives (Huysamen, Kourti and Hatton 2023). Our local policy analysis shows that this occurs in local-level policy too. We conducted an analysis of all local autism strategies in England found that local autism strategies regularly prioritise support around aspects like employment while overlooking aspects of people’s lives such as their sexuality, and intimate relationships, (Jay, Huysamen and Hatton 2024).
Within social care policy and practice sexual and intimate needs are often viewed as too personal, or someone else’s job to deal with. These views are not due to a lack of need amongst people with learning disability and autistic peoplebut from ableist views and stigmatising discourses which frame disabled and neurodivergent adults as disinterested in or incapable of intimacy, sex and relationships.
Our first project, Supporting Autistic Adults Intimate Lives (SAAIL) is a participatory research project which explored autistic adults’perspectives on how they would like to be better supported around sex and relationships. When autistic people were able to discuss their sexuality and intimate lives within their own words and on their own terms, many expressed desires, needs and relationship practices which differed or deviated from the boundaries of typical monogamous, cisgender heterosexual relationships. Many autistic adults across genders, sexualities and life stages in this study talked about exploring or preferring non-normative relationships, and the need for doing sex and relationships in ways which suited their sensory needs and preferences. This could include having separate rooms, or living in separate homes. Participants talked about the desire for intimacy and relationships which resist the heteronormative, neuronormative and ableist expectations of relationships. For example, autistic adults discussed alternative relationships such as solo-polyamory and living apart together.
Multiple participants also talked about BDSM/kink communities as safe spaces for autistic people. Here, explicit communication and boundaries helped them to feel safe to explore their desires, interests and needs. Tools used in kink, like safe words, checking in, and setting boundaries shows that pleasure and safety aren’t opposites. Autistic adults were able to create intimacy and relationships which worked for them, allowing pleasurable, safe, fulfilling and neuro-affirming relationships. Participants also discussed creating their own systems of care through relationships which work for all individuals involved and their needs. Rather than following traditional and often rigid scripts around relationships, they created chosen families, community, polyamorous and otherwise non-normative relationships grounded in communication and mutual support which emphasised doing sex and relationships in creative ways which work for the individuals involved.
Key Findings from Intimate Lives Matter
Our current project, Intimate Lives Matter: Sex, Relationships and the Care Act (which is funded by the National Institute for Health and Care Research (NIHR)) follows on from this work and aims to co-produce resources and training to help social workers to support adults with learning disabilities and autistic adults’ intimate lives within Care Act assessments. A Care Act assessment is how social workers and other social care professionals decide who can access social care support in England by assessing an adult’s care and support needs, how these impact their wellbeing, and the outcomes that matter to them. “Developing and maintaining domestic, family and personal relationships” is one of the eligibility criteria under the Care Act (2014), however through interviewing social workers, we have found that social workers interpret this in different ways and usually only ask about family and friendships. We want to highlight to social workers that sex, relationships and intimacy are normal, healthy parts of life which should be recognised and supported within social care. We want to make sure that people get adequate support around sex and relationships, which is open-minded and considers autistic/learning disability specific sexual needs, and affirms different ways of doing sex and relationships.
The project involves undertaking interviews, focus groups and workshops with social workers, autistic adults and adults with learning disabilities. We are also developing good practice case studies to highlight good work around supporting sex and relationships to show social care staff that good support can and does happen. Finally, we will develop, deliver and evaluate training to improve care around sex and relationships.
So far, we have shared our findings through a number of presentations. To summarise, we found that when social workers and support staff think about autistic people and people with learning disabilities having sex, they focus on managing risk of harm and preventing STIs and unwanted pregnancies or even denying intimacy altogether. Discussions about sex are usually reactive and in response to inappropriate sexual behaviour or sexual assault. For example, when social workers discussed how they had supported autistic people and people with learning disabilities’ intimate lives, this was following inappropriate behaviour such as masturbating in shared spaces, or through concerns about mental capacity from carers or family members. While these areas are necessary, adult social care also have a positive responsibility to support people to have safe and enjoyable sex and relationships. They can offer proactive support, such as sex and relationships education, support to access sexual health services, and support to meet partners safely.
However, most social workers that participated in interviews or focus groups in our study told us that they don’t ask autistic people and people with learning disabilities about their sex and relationships needs during Care Act assessments. Autistic people and people with learning disabilities who participated in co-production workshops also told us that they often don’t feel comfortable bringing these up these needs themselves. This creates a situation where nobody is talking about sex and relationships. In social care, sex is assumed to be heterosexual and within a long-term monogamous relationship, so queer people or those interested in casual sex are often further excluded.
Additionally, we have found that sex and relationships are deprioritised in social care and are not seen as legitimate needs alongside other Care Act eligibility criteria. Some social workers pointed to Maslow’s Hierarchy of Needs to justify this, by saying social work focuses on managing needs such as food, housing, water, shelter, whilst neglecting the importance of sex and relationships for many people’s lives. Many social workers also felt uncomfortable talking about sex in their personal lives and in their role. However, many parts of social work can be uncomfortable, such as talking about toileting needs, but these needs wouldn’t be ignored due to discomfort. Multiple social workers also shared the view that autistic people and people with learning disabilities wouldn’t be interested in sex and relationships. This was especially true for people with higher support needs, who were deemed as more vulnerable, more at risk of exploitation, and thus in need of protection from sex and relationships rather than support to engage in these.
We have also found cases of good practice of autistic people and people with learning disabilities being supported around sex and relationships. For example, some social workers made sure that people had time to themselves for sex, whether this was solo or partnered. Further, other social workers supported people to understand healthy relationships, practical steps of meeting partners, and purchasing sex toys. However, it is clear that this isn’t consistent across social care.
Autistic people and people with learning disabilities have the right to express their desires, explore intimacy and pleasure. Supporting this can start with opening up conversations around sex and intimacy in social care. These conversations should be normalised. By integrating sex and relationships into Care Act assessments and reviews, we aim to make sure that autistic people and people with learning disabilities can get tailored support to live full, pleasurable and fulfilling intimate lives.
About the Authors
Dr Monique Huysamen is a Research Fellow in the Department of Social Care and Social Work at Manchester Metropolitan University. She is a critical qualitative researcher who uses feminist, queer, and participatory approaches to explore intimacy, sexuality, and sexual and reproductive justice in the lives of neurodivergent people. Her work focuses on autism, social care practice, and critical social policy. She is the principal investigator on the Supporting Autistic Adults’ Intimate Lives project and Intimate Lives Matter projects.
Dr Georgia Rivers is a Research Associate in the Department of Social Care and Social Work at Manchester Metropolitan University. They are a qualitative researcher interested in sexual and reproductive health and justice, particularly among queer and neurodivergent communities. They have a PhD in transmasculine peoples experiences of cervical screening and have previously worked as a research associate on a project about supporting older adults’ sexuality within residential aged care.
Project Acknowledgements
The SAAIL and Intimate Lives Matter research studies represents independent research funded by the National Institute for Health and Care Research (NIHR) School for Social Care Research (SSCR) and Research Programme for Social Care (RPSC) respectively. The views expressed are those of the authors and not necessarily those of the SSCR, RPSC, NIHR or Department of Health and Social Care.
References
Huysamen, Monique, Marianthi Kourti, and Christopher Hatton. 2023. “A Critical Overview of How English Health and Social Care Publications Represent Autistic Adults’ Intimate Lives.” Critical Social Policy 43 (4): 626–53. https://doi.org/10.1177/02610183221142216.
Jay, Bethany, Monique Huysamen, and Christopher Hatton. 2024. “A Critical Analysis of How Local Autism Strategies Represent Autistic Adults’ Intimate Lives.” Autism in Adulthood. https://doi.org/10.1089/aut.2024.0182.
